RACP Guidelines for CFS

FAILURES OF PROCESS
RACP CFS CLINICAL PRACTICE GUIDELINES DEVELOPMENT 1996–2002

In 1996 the RACP WG committed to
"following the procedures laid down in the recently published NHMRC Guidelines for the Development and Implementation of Clinical Practice Guidelines".[1]

This commitment cannot be substantiated.

The process does not conform to NHMRC Guidelines in major areas, including

Application for NHMRC accreditation has not proceeded.

The absence of terms of reference

The composition of the Working Group (WG)

The failure to address key consumer issues

Despite funding approval in early 1996, the obscure and delayed notice (23 November 1996) of the RACP CFS Clinical Practice Guidelines WG and the request for submissions with a two week closure date (5 December 1996)

Allocated response times to drafts were always brief, and disadvantaged clinicians and consumers despite the length of process.

The change of the original brief from

"guidelines on the most clinically relevant and cost effective methods of diagnosing and treating chronic fatigue syndrome" [2]

to

"the evaluation of prolonged fatigue and the diagnosis and management of chronic fatigue syndrome" (Draft 1 1997)

The broadening of the brief to give particular emphasis to fatigue, is of special concern. The psychiatric aspects of fatigue states encompasses the prolific research publications of three research team members of the WG, in particular Professor Ian Hickie.[3]

Two of these same members were responsible for both the literature search and the writing of Draft 1 1997.

While the prevalence of chronic fatigue is common with estimates of 2,316 per 100,000 population, chronic fatigue syndrome requires 6 month persistence of symptoms to meet specific criteria for diagnosis with estimates at 98–267 per 100,000.

The wide access and promotion of the RACP Draft 1 has led to many reported instances of harm, illustrated in documents appended outlining the serious case of a very ill young girl removed from her family for five years by court proceedings despite a specialist diagnosis of severe CFS. (Case of Stacey Appendix 4)

Serious ethical questions arise from the dissemination of the RACP Draft 1 CFS Guidelines and the role of the Medical Journal of Australia (MJA)

In 1996 the Commonwealth Department of Health and Aged Care (Medicare Branch) provided the initial grant of $130,000 later extended to $200,000, to the RACP. The "conditions of grant" were for an initial 6 month period with the expectation that the process would take at least 12 months, therefore an application for extension could be made at the appropriate time.

The specific "conditions of grant" and the numbers of applications for extension have not been made public. Nor has the allocation funds spent

Limited discussion

WG face to face meeting and teleconferences were held

21 September 1996 – Sydney
12 December 1996 – Teleconference
8 February 1997 – Sydney
26 July 1997 – Sydney
31 March 1998 – Teleconference
9 April 1998 – Teleconference (for those not able to make 31 March teleconference)

Only five meetings were held in more than 6 years and none in the last four years despite strong requests from clinicians and consumers for major revision

The failure of the Commonwealth Government and Department of Health and Aged Care to ensure the RACP complied with the "conditions of grant", and completed the project in a reasonable time.

Protracted timeline 1996–2002
Funding granted – early 1996
CFS review advertised and call for submissions – 23 November 1996
Closure date for submission – 5 December 1996
First draft – due April 1997 delayed
– due June / July 1997 delayed
– released December 1997
Publication of final document in MJA – due May 1998 delayed
Revised draft for final comment – due August 2000 delayed
Revised draft (without updated scientific reference list) – released late June 2001
Closure for submissions – 31 July 2001
Final manuscript (without all tables released to WG members only) – released 2 January 2002
Closure for minor comments – 18 January 2002
Publication of final document in MJA – due February 2002 delayed
– due April 2002 delayed
– due 6 May 2002

References

1. Dr Robert Loblay – CFS Clinical Practice Guidelines 25 February 1997
2. Dr Michael Wooldridge, Minister for Health Hansard p.3843 10 September 1996
3.

4. Buchwald D, Umali P, Umali J, etal Chronic fatigue and chronic fatigue syndrome: Prevalence in a Pacific North West health care system. Annals of Internal Medicine 1995;12: 81–88

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PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285

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